MOTOR NEURON DISEASE/AMYOTROPHIC LATERAL SCLEROSIS (ALS)

About the Condition

Motor neuron disease is the destruction of nerve cells in the brain and spinal cord that control the ability to use muscles and it typically manifests after forty years of age.  Nerve cells that are affected are the upper motor neurons from the brain to the spinal cord and lower motor neurons that enter the muscles further away from the spine.  Scarring of the ends of upper motor neurons in the spinal cord is termed lateral sclerosis, which causes spasticity.

Degeneration of the lower motor neurons leads to amyotrophy, the wasting away of muscles.  In this condition, there is nothing intrinsically wrong with the muscles themselves, they just are not getting the electrical impulses needed to make them move, thus allowing them to waste away.

People can have varying degrees of motor neuron disease. They may only have lateral sclerosis occurring, or only amyotrophy, or both.  When a person has both together they are said to have amyotrophic lateral sclerosis (ALS) (also known as Lou Gehrig disease), which makes up 90% of cases of motor neuron disease.

Symptoms

  • Spasticity – muscle stiffness that can lead to uncontrolled muscle movements.
  • Weakness.
  • Muscle degeneration that eventually leads to complete paralysis of the limbs.
  • In final stages, difficulty swallowing and decreased ability to breathe.
  • Involuntary muscle movements are not affected.
  • Heart, bowel, bladder and eye movements are still normal.

Useful Tips for Patients & Caregivers

Although bladder and bowel muscle movements are not affected, the ability to get up and bring oneself to the bathroom deteriorates as the disease progresses.  Be prepared for accidents to happen and don’t get mad at the patient for things they can’t control.

The following tips may help too:

  • Remember that sight, hearing, mental ability/acuity, smell and taste are often unaffected.
  • Think beyond physical limitations.
  • Set new goals and focus on what you can accomplish in spite of those physical limitations.
  • Make changes to your household to accommodate patients decline.
  • Make day-to-day objects easily accessible.
  • Find activities to stimulate the patients’ mind and keep them occupied.

SEATING PATIENTS WITH COMPLEX NEEDS

When seating patients with complex conditions such as motor neuron disease/ALS, their needs are often challenging and severe.  Read Martina’s top tips.

READ BLOG

REAL PATIENT CASE STUDY

Ivan has ALS and spends many hours of the day sitting.  His wife contacted Seating Matters for help as his armchair was not providing the support or stability he required.

READ IVAN’S STORY

Selecting the Right Chair

It is very important that the chair is adjustable to allow it to meet the changing needs of the person as their condition changes.  For patient’s with motor neuron disease/ALS, the chair will need to become more supportive as time goes on and it is good to start with a chair that you can add accessories to as new symptoms arise.

The Sorrento™ and Phoenix™ in particular are designed to suit the needs of those with MND/ALS, especially in later stages of the disease where muscular function is decreased.  These two Seating Matters chairs are highly adjustable and accessories can be included at a later date if they are not needed at the initial assessment.  This allows the chair to meet changing needs over a long period of time.

Both the Sorrento and Phoenix come in manual and powered options. Manual adjustment leaves the control of the seating positions to the caregiver. Partially motorized options give the user of the chair more independent control to change the angle of tilt in space and their leg elevation as and when desired.  Fully motorized options give the user of the chair control to change the angle of tilt in space, their leg elevation and the back angle recline as and when desired.

Bear in mind, each person is different and so you must use clinical judgement, knowledge of the patient, environmental considerations and personal preferences before deciding on which Seating Matters chair to use.